An Epic of Dizziness Part Four

It was here! The day had finally arrived when I could see the Physical Therapist! It was August 3rd, 2011. I was ready to get this dizziness problem taken care of. I was still nervous about the whole procedure, but ready despite the apprehension. You see, I had done some research and I knew that I would have to lie flat back on a padded table and I wasn’t liking that part very much. Knowledge does give you power, but sometimes it just makes you worry. I’d been feeling about 80% better the past two or three days so that helped keep my fear in check somewhat. So, my husband and I made a short 20 minute drive over to the Physical Therapist to try and get me fixed.

The Physical Therapist greeted us with a warm smile and a nice honest looking face. I liked him right off the bat. He seemed to be compassionate and when you’re having issues, don’t you need someone compassionate? I trusted him and felt pretty much at ease. He spent quite a bit of time talking to us. He said the good thing about BPPV is that it’s pretty easy to fix, but the bad thing is, about half the people have another episode within the first year. He asked me questions such as “How has this changed your life?” and “What are your symptoms?” It’s a good thing my husband was with me, because I was still nervous about how dizzy the procedure would make me and some things were slipping my mind. So, my husband piped in and helped me answer some questions. He told the PT that I hadn’t been attending choir, and I always did before. It was true, I hadn’t been attending a few weeks as I was still hesitant to drive much and feared getting severely ill out in public. As I admitted my fears to the PT I broke down and cried. I apologized as I was embarrassed to be crying like that, but it just came out and there wasn’t anything I could do to hold it back. The PT also explained the function of the inner ear and how the otoconia (ear crystals or ear rocks) can become displaced. He explained what procedure we would be doing and what I might expect during it.

I climbed on top of the table and didn’t realized that I was tightly grasping the sides of the table. The PT picked up on my nervousness and told me not to worry that he would keep hold of me during the whole procedure and I wouldn’t fall off the table. He proceeded to perform the Epley Maneuver for my left ear, which my ENT believed was the affected side. To my surprise, I felt nothing. We talked a bit more and he decided to do another procedure to see if he could evoke nystagmus which would show that I had BPPV. It is called the Gans Repositioning Maneuver. He watched my eyes closely as he did with the other procedure and this time he did notice some nystagmus and I felt myself going into a spin, but it didn’t last long. As we got to the end of the procedure he kept his hands on me to keep me steady as I still felt off kilter when the procedure was finished. It got better, though, and I felt more like I did when I walked in after a few minutes. He seemed less than convinced that it was indeed BPPV. Usually, he books patients for a follow-up two weeks from the initial procedure and performs it again. He explained it sometimes takes 2 or 3 times for the procedure to clear the crystals and put them in their right place. He told us that based on where the crystals or otoconia lodge themselves determines which procedure work. He explained when the otoconia are lodged in a certain place, the area I can’t recall now, but this particular location causes extreme dizziness when procedures are performed to try to correct it. Some patients almost throw themselves off the table and he has had to lie on top of them to hold them down. The patient has severe nausea as the spinning sensation lasts longer than normal and can result in vomiting. I could imagine that he has probably been in a bad location when a patient of his gets that sick as he is right there holding them down. What seemed to puzzle him was that I was having the sensation of movement when I wasn’t moving my head in any particular position and that was not usual for BPPV. He talked about how some people describe BPPV. They’ve told him their head feels like a snow globe where the fake snow is floating around. It was ironic because that is what I had told my husband that I was feeling just a few days earlier. So we left the office with a follow-up appointment for two weeks out. Still didn’t know exactly what was going on. Was it BPPV or something else? How come I don’t fit the typical pattern of symptoms? Many questions went through my mind.

The next few days were pretty much the same as before. I’d have days that I felt about 90% better and then parts of days that I’d feel 60% or so. Honestly, most of the time I would feel different each hour. Then one day in particular I felt an increase in pressure in my head. Storms were rolling into our area. I felt it coming before it did. The nasty rocking sensation that I was having really increased. I was still sleeping on the sofa, as I feared falling off the bed and I’d found a way to wedge myself in the corner so I wouldn’t roll over on my side as sometimes that made me feel bad. I had to take one of the first meds that they gave me at the Centra Care walk in clinic when I first started with the whole thing. I hated to, but I knew I would have been sick to my stomach most of the night. I already felt the rolling waves in my gut as the couch and room were moving around. I slept like a zombie, it was a fitful sleep. I awoke in the morning still zombified and remembering a very vivid dream I’d had. My pastor was in it and he was praying for me. He was praying intently as his hands grasped both sides of my head and they were placed over my ears. When he spoke it felt as if he were shaking my head in a jerking type movement, he was praying for healing. I wanted to be comforted by the dream as I knew people were praying for me and I’d hoped that healing would happen. I would be lying if I didn’t admit that. Who wants to be sick? The reality sunk in, though: I was still sick. I did feel a little better by about 3pm that day though, partially because the medication that robbed me of any possible productivity was wearing off and the bad weather was moving out of our area. I took note of the correlation of the weather and my symptoms increasing.

In the meantime I waited for my next appointment with the compassionate P.T. and I researched a lot! I found an organization called Veda. They had great resources available to educate me on the many different types of dizziness disorders and the symptoms. I tried to narrow down what I did or didn’t have. I continued to browse the message boards and took in a lot of advice from others. I was recommended to go see a doctor that had fixed someone with BPPV in our church. I didn’t make an appointment with him because I was already going to my PT. I kept his name in mind just in case. I was still piecing together a puzzle. Was it BPPV or was something else going on too? I still had the problem with my arm and shoulder. I hadn’t made it to the Orthopedic Doctor yet. I needed to get that checked out as well. How can all this be happening at once?

www.veda.org

19 thoughts on “An Epic of Dizziness Part Four

  1. Hi Melissa, I’m having pretty much the same things as you are experiencing. Shoulder pain occasionally from using the computer too much as part of my work. From the doctor visits suspecting inner ear infection to ENT doctor saying i have BPPV to physiotherapist perfoming the epley on me. I’m still suffering from this. And continuing to strongly believe that God will eventually bring this to past. I noticed this happened a year ago now for you as you wrote this in 2011. I’m booked in to see another physiotherapist with the assumption that I now might have a wrong diagnosis because the epley manuever did not work and suspecting my pressure built up on my C1, C2 section of my spine. How did it turn out for you in the end? I will also keep you in my prayers and continue to stay positive.

  2. Nick,
    Hope your having a good day! Thanks for sharing some of what your experiencing. Just so you know as I write the other parts to my Epic of Dizziness story they are currently being written expressing what happened to me starting last year. I will eventually be up to present day, so please check back for parts 5 and onward. So important to stay positive! I will pray for you. We can’t control what happens to us, only
    how we respond! God Bless!

  3. Thanks Melissa, now that you have asked. I am feeling a littIe better today. I have your page subscribed. And will definitely check back. Thanks for your words of encouragement and prayer. Also for writing these posts as I’m sure there are a lot of people with the same issues looking for answers and finding strength from God through reading your writing. You be blessed. 🙂

  4. Dear Melissa, i am enjoying reading your journey vey much. It’s actually frightening to read that everyone has or has had exactly the same as me. Please keep it up. May I ask a question – in one of the replies posted by a reader some mention was made of a (please forgive spelling) a neuritic or something similar diagnosis. Now I can’t find it. Would it be possble to get me that specific comment. I’d like to ask my audiologist about it.
    Norman – from South Africa.

  5. I’m not sure what it was. Anyway, I spent so much money going to physio and doctors. I decided to just forget about it and get on with daily life. After a while now my dizziness has subsided. To a point i think it’s almost gone now. I guess time will heal it. I’m suspecting its an ear infection and it’s viral. and viruses take a bit of time to be out of your system. I can only praise God for this.
    How are you feeling now?

  6. Don’t want to give away the rest of my story yet. I will say this, A good attitude and trust in God will get you through just about anything! I agree all the Doctors visits can take a toll on your wallet! Yes, healing can come in time, be it healing of mind, body or spirit. Just know that with God anything is possible! I’m glad you’re feeling better.

  7. Hi Melisa and evryone else from sunny South Africa where we are in the middle of our hot summer holidays.
    A recent phenomenon that I’ve encountered is that on some days my head feels like evrything is loose and moving around ( hope I have something inside to move – ha ha). Imagine being on a boat in rough seas and everything is shifting from side to side as the boat moves.This is very disconcerting and causes some nausea although fortunately I’m not a vomiter.The result is often a dull headache and the only thing that I can do then is lie down for a while.
    Does anyone have any input on this for me? I’d like to hear from you.
    All the best to you and your families for 2013 and may this be the year that we all wake up one day and voila, we are all cured. I think our families that have to suffer along with us, albeit in a different way, all need a special vote of appreciation. I know that my wife with her patience and understanding deserves one.

  8. Norman,

    Hello! Happy New Year! Sorry you’re experiencing some rough symptoms. I’ve not had the feeling of anything lose in my head, but the rocking on a boat is familiar to me. I agree vestibular problems affect the whole family. Make sure they find out as much about what you’re experiencing as they can. It will help them be more patient when you have those especially difficult days. Best Wishes!

  9. Hi Melissa,

    I’m still catching up on the blogs I follow (including yours) and I found this post…I had a severe episode of Vertigo which frightened me. That was in August last year. I learned that it was due to something about calorics or sensitivity to extreme temperature changes in my left ear. I was prescribed Serc so I could continue to drive or move around “normally”. I hope yours was correctly diagnosed and treated now.

    Warmly,
    Mary

  10. Melissa … i found your blog through the vestibuIar web site and subscribed back in February hoping for updates to learn the outcome of your struggle. I’m sorry to say that I find it a little unkind that you have made promises to update your readers, many of us also struggling with vestibular-related dizziness, and have not. If you had a happy ending that would provide hope for the rest of us.

  11. Jerry,
    I’m sorry that you feel I’ve been unkind in updating my story about my vertigo issues. Honestly, my story is just that my story and it’s not easy to commit to writing the whole story. I intended to share it to let others know they aren’t alone, and your not alone Jerry. I can tell you that I am better, I am not 100% at all. I have better days and days that I’m under the weather, but I can do all I need to do. I think your brain learns to compensate over time, Jerry, please don’t lose hope. If you understand that everyones story is different, it can help you a lot. I’ve been so busy and with writing, especially something so personal, you have to really want to take yourself back to that point in your life. My best wishes to you. I didn’t mean to let you down.

  12. Hello Melissa and our fellow sufferers. Well the seasons have moved on and we are in the middle of a wonderful winter down here in South Africa. – warm sunny days of about 20-21 degrees C and very cold nights down to 4 degrees C.
    I’ve found that the weather doesn’t impact on me at all. Each day is still like a Smartie box – you never know what you’ll get.
    But the good news is that having exhausted all the head shaking and rolling and positional manoeuvres nothing helped and I’ve arrived at the only solution available, i.e. surgery. Next week on the 11th July the ENT surgeon who happens to be a highly qualified Otologist will drill a hole at the back of my ear (there isn’t much inside the head that can drain out – ha ha) and plug the lateral canal. This will stop the crystals from moving and should alleviate my symptoms.
    Whether we pray to the Christian or Jewish G-d is irrelevant. But I do know that Hashem will look after me and get me cured so that I can carry on with life.

  13. Norman, I’ve been wondering about you. So happy that you’re long wait for surgery is almost over! I will lift you up in prayer, that you will heal quickly. Thanks for updating me & the other’s following my blog. God’s blessings to you.

  14. Hi Melissa,

    Thanks for the response. Sorry if I am a little frustrated but I am now closing out my 6th month of this condition and am so tired of feeling less than myself. I was especially curious about your story because of the element of the arm and shoulder issue which I have also had. I guess I thought the end to your saga might be that you go to the bottom of the arm/shoulder issue and that alleviated the dizziness. The reason I suspected this is that in all my researching months ago I came across a web site from a guy who had dizziness and other symptoms that apparently ended up being a misalignment between his skull, C1 and C3 vertebras. (www.upcspine.com). This seemed plausible to me because in the four months that preceded this all starting for me in January I had been seeing a chiropractor for tingling/numbness in my left arm and hand. Since finding his web site I have already seen a new chiropractor that specializes in upper cervical spine and am now about to see another. Early in my saga I was diagnosed by an ENT, after a VNG, as having bilateral hypoactive vestibulopathy but an ear specialist who came highly recommended by several area doctors looked at the results and disagreed. He conducted an ECOG–where they put inserts down into your ear canals right next to the eardrums and make loud clicking noises for about 15 minutes (each ear) and monitor the response with sensors that are attached to your head–and concluded that there is excess fluid in the inner ear causing pressure. I have been on a diuretic for 8 weeks now that is intended to dry things out but it’s not clear to me that it is working and frankly it doesn’t explain all the other symptoms I have had, hence my continuation down the chiropractor path.

    I completely understand what you mean about needing to be able to take yourself back to be able to write about it. I am trying to look forward and don’t much care for thinking about the past 6 months. The sad part is that I also don’t like thinking back before this all began because it makes me feel bad to remember how great my life was before this all started.

    So again, apologies, and thanks for responding. – Jerry

  15. Jerry,
    It’s good to hear back from you. I understand entirely how frustrating this can be. I see how our stories are somewhat similar. My arm/shoulder thing is gone now, but once I get back to updating my blog, I’ll share all the ins and outs of that little saga. Keep us informed how you’re doing. You can help others that stumble upon this post. Good luck, keep pressing on.

  16. On Memorial Day 2013 I got my first Vertigo attack when I woke up and about 4 hours later when I ducked my head to put on a bathing suit. I went to an emergency clinic and was lucky to find a doctor who knew how to do the Epley Maneuver and knew that I had BPPV. I went to 2 ENTs and a dizziness specialist after that and they all said the same thing. I had BPPV and there was nothing I could do. All three doctors did the Epley on me and my eyes went wild and I had vertigo attacks and unfortunately residual dizziness that was so severe, I could not really work or do much but watch tv and do my balance exercises. I was really loosing it everyday having panic attacks that lasted all day for weeks until finally after 4 weeks I noticed that the dizziness was getting better. 2 weeks after that it was manageable and I was back at work. 2 weeks after that I had another attack. I ofcouse lost it. The vertigo came back full force with 6 weeks of residual dizziness. The first day I called the doctors again and went to all the appointments. The doctors said I had to wait it out. Frantic my family and I went back on line for answers and luckily my husband found the answer!!!! http://www.ncbi.nlm.nih.gov/pubmed/23245911 It was Vitamin D deficiency! I knew I had been deficient for years but always thought it was no biggie. I immediately read all there is on Vit D and went for a blood test. I was at deficient at 20ng so I began to take 5000iu and to lay out 30 min a day. I took Vit test every 30 days to make sure I was going up until I got to 50ng and now Im trying to figure out how to stay steady. I have not had any more vertigo attacks. And after the 6 weeks of residual dizziness went away I have not had any more. I hope this helps some people. I promised that I would go on as many blogs and forums I could find if I found something. I lived on these forums looking for answers. Please get tested for VIt D. Please do your research on line. Check out that scientific study and be your own doctor. Good luck friends. I know how horrible this journey is but there is light at the end of this tunnel.

  17. Samantha,

    Thanks for sharing your story. Everyone’s is different. I”m happy yours ended soon. Keep sharing. It is so helpful to so many. God Bless!

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